Reduction in Levo causing breast pain

[Sanjita123]

I’ve had my levothyroxine dose reduced by 25mg and suddenly started with terrible pains in both breasts. Has anyone else had this?

[SlowDragon Administrator]

Please add results that caused dose to be reduced

If Ft3 wasn’t over range you weren’t over medicated

Essential to get FULL thyroid and vitamin testing done BEFORE ever agreeing to dose reduction

Looking at previous posts you were only on 100mcg levothyroxine and having issues with different brands levothyroxine

Approx how much do you weigh in kilo

Guidelines on dose by weight is approx 1.6mcg per kilo of your weight

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

What vitamin supplements are you currently taking

Do you have Hashimoto’s

[Sanjita123 in reply to SlowDragon]

You are bloomin wonderful .. this is so helpful. I will have tests done privately. Re my results - They just said my TSH had gone from 14.7 to 19.6 .. no other details. Several months earlier I had managed to get them to swap my brand to eltroxin because of the problems I was having with the new actavis brand. I thought maybe eltroxin was a bit stronger. I’ve been on the reduced dose for 3 weeks and my breasts started hurting 2 weeks ago and have got progressively worse. Added to all this I have long covid (8 months in) and many of the symptoms of long covid mimic thyroid problems - one common symptom of long covid is horrendous sweats, the docs opinion was that the over medication could be causing the sweats but I’m part of a long covid fb group and literally hundreds of people are getting them and I never had them before I got covid even though I was on same dose and same brand. I’ve had tests for blood count which was 122 which they said was low but they only look at if it’s below 120, they did say it was unusual because my iron levels were good - they will not explore this any further. All my vitamin levels were normal, but as I told them I do take supplements - vitamin b complex, vit c, vit d and magnesium ( all to help with long covid) so the tests won’t be a true reflection of what my body is producing. Your advice is so very much appreciated.

[Sanjita123 in reply to SlowDragon]

I weigh 54.5 kilos so should be on 87mcg. I’m now on 75 so not too far out to be fair.

[Sanjita123 in reply to SlowDragon]

Hashimotis .. I don’t have any swelling at front of neck but since long covid I do have intermittent pain in the front of my neck. I’ve told them about this they think it could be long covid issues.

[Sanjita123 in reply to SlowDragon]

Hi slow dragon .. only just managed to get a copy of my last results from several weeks ago ..

Serum tsh level XaELV <0.01 mu/L ref (0.38 - 5.35)

T3 4.8 pmolL (3.8 - 6.2)

T4 (XaERr) 19.6 pmol/L (7.9 - 14.4)

seems as if I have no argument re their decision to reduce my dose but a few weeks after the reduction I started with all sorts of hypo symptoms and ithe new breast pain problem.

I have another test at 8.30 tomorrow morning - last time I took my medication a few hours before the test ( I always take it first thing in the morning) but will follow your advice and wait till after my test tomorrow

I need to get full tests done privately once I get the results of this test back, but Unfortunately I can’t get the results till mid September because no doctors are available to speak to me about them till then. I am thinking of increasing my dose of eltroxin from 75 to 100 mg a couple of days a week only just to get some relieve from my symptoms.

I’ve gone gluten free a couple of weeks ago - not noticed any improvement yet but I know it’s early days.

Thanks for all the advice

Sandra

[SlowDragon Administrator in reply to Sanjita123]

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Important to test vitamin D, folate, ferritin and B12 regularly

What vitamin supplements are you currently taking

Likely low vitamin levels with Hashimoto’s

How long have you been on reduced dose now?

Suggest you stay on current dose and get retested at 6 weeks

If you change dose you would need to wait another 6 weeks before testing

[Sanjita123 in reply to SlowDragon]

Been on lower dose dose for 7 weeks now. Had been on 100 mg for several years before the test that showed over medication.

They did test all vitamins - all normal but I was taking vit D, B and C and magnesium.

Before the test that shows over medication I had not eaten or drank anything but water but I had taken my 100 mg Levo a couple of hours before. Getting tested tomorrow 8.30 - this time I’ve only been taking fish oil supplement and I won’t take my levo before I’m tested. Once that test is done I have to wait till mid Sept to speak to a doctor so will take the 100mg a few days a week because I honestly don’t think they will do another test unless there is a huge change in my results.

After that I guess I’m on the path of private treatment and buying my own levo.

Thanks again

Sandra

[SlowDragon Administrator in reply to Sanjita123]

So if you took Levothyroxine before test the Ft4 is false high

[Sanjita123 in reply to SlowDragon]

I am praying that’s the case.. thanks for the advice - I’ll keep you posted

[Sanjita123 in reply to SlowDragon]

Hi Slow Dragon.. since my last post I asked my doctor for another thyroid test .. they only tested my tsh which came back 0.74 (0.38 - 5.35) so to them all is well. I told them how dreadfully ill I felt and they said they may be able to ween me off Levo but still with the aim of getting me to reduce by 25 mg, but they need to write to a consultant to get permission. In the meantime I am in a terrible state - all hypo symptoms fatigue, constipation, weight gain (5lbs in 3 months) depression, hoarse voice. This is in addition too long covid problems which before the reduction in levo were slowly improving. I have managed to get in with a private consultant tomorrow who is going to do comprehensive tests and I’m hoping he will recommend t3. The only thing is my appointment is 3pm. They have said to take my levo as normal in the morning but not to eat from around 11. I’m really worried that my t3 might look high and then the need for t3 might be dismissed. Do you have any thoughts on how I can be sure my t3 is at its lowest? Hope this makes sense. My previous test before the most recent tsh only test showed tsh <0.01 (3.8-5.35)free t3 4.8 (3.8 - 6.2) T4 19.6. (7.9. - 14.4). I also chased up another test I had done in November but was never told the results - tsh was 0.21 (0.38 - 5.33) free t3 3.8 (3.8-6.2) no T4 was taken so it looks to me like t3 has been low since I’ve been feeling unwell Many thanks

[JAmanda]

Yes!!! Sharp pains in breasts. Really odd.

[Sanjita123 in reply to JAmanda]

Thank you for responding .. did they go eventually?

[Sanjita123 in reply to JAmanda]

Hi there JAmanda.. can I ask how long you have suffered with the breast pain and how much they reduced your dose? Many thanks

[JAmanda in reply to Sanjita123]

I do all the raiding and lowering of dose myself… I didn’t take any Levo today as I decided to try just T3 and already have sharp pains in my boobs! Could be a coincidence but I’ll see how I go.

[humanbean]

They just said my TSH had gone from 14.7 to 19.6

And you had your dose reduced!!???????

If your TSH had gone up you needed an increase in your dose not a reduction. There is a possibility that the numbers you've given were for Free T4, rather than TSH. But if that is the case we would need the reference ranges to make sense of them. Some reference ranges are around 12 - 22, in which case a level of 19.6 would be fine, and some reference range are around 7 - 14 in which case your level would be over the range.

But we really need precise information about your tests, results and reference ranges rather than guessing.

...

Levothyroxine is partly made of iodine. Iodine is important for breast health. (Do a web search for "iodine breasts" and you'll get loads of links.)

Having said that iodine is something to be very wary of. In the past it has been used to treat overactive thyroid (hyperthyroidism), and would be bad news for someone with underactive thyroid (hypothyroidism) IF they didn't need it. People should only take iodine if they have had a test and KNOW they are deficient.

It might be worth your while to get a test of your iodine levels done. There are several different ways in which iodine levels can be tested, and many of them are useless. The best test is a non-loading test with a urine sample.

zrtlab.com/blog/archive/fla...

townsendletter.com/Jan2013/...

I don't know if the NHS ever test iodine but it is possible to get a test done privately. I know SeasideSusie has mentioned before which companies do a suitable test but I can't remember the details. I think it might be Genova Diagnostics UK but hopefully Susie can confirm.

If I'm right, you need to know that Genova Diagnostics doesn't deal directly with the public which makes it awkward. More info about dealing with them can be found here :

thyroiduk.org/help-and-supp...

These are the instructions supplied by Genova :

gdx.net/uk/core-uk/kit-inst...

and a sample report :

gdx.net/uk/core-uk/sample-r...

If it turns out that you are deficient in iodine then I'm afraid I don't know anything about supplementing iodine. I know you can buy iodine in various forms on Amazon but I have no idea about dosing, and don't know which form is best.

[SeasideSusie Remembering]

Sanjita123

humanbean is correct. It is the Genova urine iodine test that is the best one to do.

Order Code: END25

It will establish existing levels and can monitor iodine supplementation.

You can find it by clicking on the link Humanbean has given to ThyroidUK's page, then clicking on the link to Genova's pdf list of tests, it's on page 3.

[Sanjita123 in reply to SeasideSusie]

Many thanks .. I’ll look into this 👍🏻

[Sanjita123 in reply to SeasideSusie]

Hi there, Seaside Susie, I’m at my wits end now with my thyroid, long covid and breast pain. I know we are not allowed to recommend endocrinologists but can you advise first steps to finding one? Thanks

[SeasideSusie Remembering in reply to Sanjita123]

Sanjita123

The only experience I have of an endo was 20 years ago, he was a bully, he made me very ill, and I would rather stick pins in my eyes than see an endo again.

However, some people do have positive experiences.

First step is to send for the list of thyroid friendly endos from Dionne at ThyroidUK:

email - [e-mail]

Then see who on that list you can travel to.

Then ask on the forum for feedback to be sent to you in a private message on any that may be suitable. You can name endocrinologists in your post title or in your post but we cannot discuss individual doctors on the forum so your post will have replies turned off and members reminded to send information in a private message only.

In the meantime you could make a new post asking for recommendations for endos in ..... < your area > ...... to be sent to you in a private message. Again the post will have replies turned off to avoid any information being posted on the forum.

Always bear in mind that many members have found their consultations disappointing and they are no further forward as even if they are private endos they may very well just toe the NHS line.

[Sanjita123 in reply to SeasideSusie]

Thanks so much for getting back to me .. my desperation to see some one quickly is that if the change in my dosage is causing breast pain, I need to know if this is due to it instigating hormone issues - (too much or too little oestrogen) it’s a bit like me taking HRT at 59 - for the amount of time my hormones are disturbed it could increase my risk of breast cancer in the future. So I need to understand what’s going on quickly. I have asked my gp to test my oestrogen levels which might put my mind at rest a bit, but there’s a wait for that. In the meantime I feel like I am damaging myself being on the lower dose. The pain in my breasts started 3 weeks after switching to the lower dose. I feel like swapping back to 100 mg to get rid of the breast pain. Thanks for the extra info too.

[SeasideSusie Remembering in reply to Sanjita123]

Sanjita123

PS - about your breast pain. If this is still a problem you might want to consider a supplement I was recommended by a breast specialist. I was having pain and after a mammogram discounted any problem the consultant suggested that for mastalgia (breast pain) he recommends Starflower Oil. He recommends this over Evening Primrose Oil as it contains more GLA (gamma-linolenic acid).

If you want to try it please make sure you buy one that doesn't contain pyrrolizidine alkaloids, it should say either PA-free or free from pyrrolizidine alkaloids (PAs are toxins).

The brand I use is Higher Nature Life Stage Starflower Oil. It is cold pressed and each capsule contains 1000mg which gives 220mg of GLA. The specialist recommended starting on 3 a day for 3 months, reduce to 2 a day, reduce further if you wish or stop. Pain may have ceased by then.

He also recommended getting fitted for a good fitting bra by a specialist shop.

[Sanjita123 in reply to SeasideSusie]

Thank you for this extra info 👍🏻

[Sanjita123]

Many thanks for the info, very much appreciated. I need to get hold of the full results of my tests or get more done privately. I’ll look into all the links you sent .. I clearly have a lot to learn 👍🏻

[SlowDragon Administrator in reply to Sanjita123]

Many people when adequately treated will have extremely low TSH

Most important results are ALWAYS Ft3, followed by Ft4

Essential to always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

All my vitamin levels were normal, but as I told them I do take supplements - vitamin b complex, vit c, vit d and magnesium ( all to help with long covid) so the tests won’t be a true reflection of what my body is producing.

EXACTLY what vitamin supplements are you currently taking

Important to stop taking any supplements that contain biotin (eg vitamin B complex) a week before ALL BLOOD TESTS as biotin can falsely affect test results

Sweats, especially at night often low B12

NHS only tests and treats vitamin deficiencies

On levothyroxine we need OPTIMAL vitamin levels

Please add actual results and ranges

Are you on absolutely strictly gluten free diet

If not, get coeliac blood test done BEFORE trialing strictly gluten free minimum 3-6 months

Pain in thyroid, especially when under medicated if you have Ord’s thyroiditis …..thyroid shrinks and shrivels up. Can cause intense pain .

Ord’s is Autoimmune cause, like Hashimoto’s